Pulmozyme

kitomd21

New member
Ellie was admitted at 2 weeks of age due to a severe cough though it was most likely due to aspiration pneumonia than CF-related (or, complicated by CF). She has seldom coughed since that time. We started her on Pulmozyme last October due to "changes" in her chest rads - though not accompanied by a cough, nor has she cultured anything other than staph. Her doctor stated that the "changes" could be reversed if we started Pulmozyme. She hasn't had any adverse affects to speak of.

Lack of long-term studies essentially equates to the fact that the FDA approved the drug based upon sufficient data and didn't require further long-term data. I feel that there are indeed long-term studies - they have/are being conducted simply by the fact that patients have taken the drug for the past 10+ years without further required labeling on the product (i.e., long-term use has proven safe, overall).

Children under 5 are generally unable to perform the necessary breathing tests in order to achieve accurate test results...thus they weren't used for the studies. I don't think there is any particular reason for lack of data in this area other than for that reason....
 

kitomd21

New member
Ellie was admitted at 2 weeks of age due to a severe cough though it was most likely due to aspiration pneumonia than CF-related (or, complicated by CF). She has seldom coughed since that time. We started her on Pulmozyme last October due to "changes" in her chest rads - though not accompanied by a cough, nor has she cultured anything other than staph. Her doctor stated that the "changes" could be reversed if we started Pulmozyme. She hasn't had any adverse affects to speak of.

Lack of long-term studies essentially equates to the fact that the FDA approved the drug based upon sufficient data and didn't require further long-term data. I feel that there are indeed long-term studies - they have/are being conducted simply by the fact that patients have taken the drug for the past 10+ years without further required labeling on the product (i.e., long-term use has proven safe, overall).

Children under 5 are generally unable to perform the necessary breathing tests in order to achieve accurate test results...thus they weren't used for the studies. I don't think there is any particular reason for lack of data in this area other than for that reason....
 

kitomd21

New member
Ellie was admitted at 2 weeks of age due to a severe cough though it was most likely due to aspiration pneumonia than CF-related (or, complicated by CF). She has seldom coughed since that time. We started her on Pulmozyme last October due to "changes" in her chest rads - though not accompanied by a cough, nor has she cultured anything other than staph. Her doctor stated that the "changes" could be reversed if we started Pulmozyme. She hasn't had any adverse affects to speak of.

Lack of long-term studies essentially equates to the fact that the FDA approved the drug based upon sufficient data and didn't require further long-term data. I feel that there are indeed long-term studies - they have/are being conducted simply by the fact that patients have taken the drug for the past 10+ years without further required labeling on the product (i.e., long-term use has proven safe, overall).

Children under 5 are generally unable to perform the necessary breathing tests in order to achieve accurate test results...thus they weren't used for the studies. I don't think there is any particular reason for lack of data in this area other than for that reason....
 

kitomd21

New member
Ellie was admitted at 2 weeks of age due to a severe cough though it was most likely due to aspiration pneumonia than CF-related (or, complicated by CF). She has seldom coughed since that time. We started her on Pulmozyme last October due to "changes" in her chest rads - though not accompanied by a cough, nor has she cultured anything other than staph. Her doctor stated that the "changes" could be reversed if we started Pulmozyme. She hasn't had any adverse affects to speak of.

Lack of long-term studies essentially equates to the fact that the FDA approved the drug based upon sufficient data and didn't require further long-term data. I feel that there are indeed long-term studies - they have/are being conducted simply by the fact that patients have taken the drug for the past 10+ years without further required labeling on the product (i.e., long-term use has proven safe, overall).

Children under 5 are generally unable to perform the necessary breathing tests in order to achieve accurate test results...thus they weren't used for the studies. I don't think there is any particular reason for lack of data in this area other than for that reason....
 

kitomd21

New member
Ellie was admitted at 2 weeks of age due to a severe cough though it was most likely due to aspiration pneumonia than CF-related (or, complicated by CF). She has seldom coughed since that time. We started her on Pulmozyme last October due to "changes" in her chest rads - though not accompanied by a cough, nor has she cultured anything other than staph. Her doctor stated that the "changes" could be reversed if we started Pulmozyme. She hasn't had any adverse affects to speak of.
<br />
<br />Lack of long-term studies essentially equates to the fact that the FDA approved the drug based upon sufficient data and didn't require further long-term data. I feel that there are indeed long-term studies - they have/are being conducted simply by the fact that patients have taken the drug for the past 10+ years without further required labeling on the product (i.e., long-term use has proven safe, overall).
<br />
<br />Children under 5 are generally unable to perform the necessary breathing tests in order to achieve accurate test results...thus they weren't used for the studies. I don't think there is any particular reason for lack of data in this area other than for that reason....
 

Mom2Max

New member
Max started it a few months ago (he is now 2 1/2). I was hesitant to start him on it as well, but when he developed a cough that wouldn't go away, I agreed to start it. Luckily, the Pulmozyme did improve the cough & we have not experienced any negative side effects.
 

Mom2Max

New member
Max started it a few months ago (he is now 2 1/2). I was hesitant to start him on it as well, but when he developed a cough that wouldn't go away, I agreed to start it. Luckily, the Pulmozyme did improve the cough & we have not experienced any negative side effects.
 

Mom2Max

New member
Max started it a few months ago (he is now 2 1/2). I was hesitant to start him on it as well, but when he developed a cough that wouldn't go away, I agreed to start it. Luckily, the Pulmozyme did improve the cough & we have not experienced any negative side effects.
 

Mom2Max

New member
Max started it a few months ago (he is now 2 1/2). I was hesitant to start him on it as well, but when he developed a cough that wouldn't go away, I agreed to start it. Luckily, the Pulmozyme did improve the cough & we have not experienced any negative side effects.
 

Mom2Max

New member
Max started it a few months ago (he is now 2 1/2). I was hesitant to start him on it as well, but when he developed a cough that wouldn't go away, I agreed to start it. Luckily, the Pulmozyme did improve the cough & we have not experienced any negative side effects.
 

bkc3

New member
our clinic removed pulmozyme from our sons treatments when he started hypertonic saline. Anyone else do this? I'm wondering now if 1x daily pulmozyme should be added back into the routine
 

bkc3

New member
our clinic removed pulmozyme from our sons treatments when he started hypertonic saline. Anyone else do this? I'm wondering now if 1x daily pulmozyme should be added back into the routine
 

bkc3

New member
our clinic removed pulmozyme from our sons treatments when he started hypertonic saline. Anyone else do this? I'm wondering now if 1x daily pulmozyme should be added back into the routine
 

bkc3

New member
our clinic removed pulmozyme from our sons treatments when he started hypertonic saline. Anyone else do this? I'm wondering now if 1x daily pulmozyme should be added back into the routine
 

bkc3

New member
our clinic removed pulmozyme from our sons treatments when he started hypertonic saline. Anyone else do this? I'm wondering now if 1x daily pulmozyme should be added back into the routine
 

Gnome

New member
My kids have also shown no symptoms and have to this date have never cultured anything. But Ian had a broncoscope at age 3 where they take a small camera and look at his lungs. What they saw was irritation which one doesn't see in regular lungs. So they started him on Pulmozyme then. My daughter was had an even better broncoscope she had lungs of a normal child. So no pulmozyme for her.
 

Gnome

New member
My kids have also shown no symptoms and have to this date have never cultured anything. But Ian had a broncoscope at age 3 where they take a small camera and look at his lungs. What they saw was irritation which one doesn't see in regular lungs. So they started him on Pulmozyme then. My daughter was had an even better broncoscope she had lungs of a normal child. So no pulmozyme for her.
 

Gnome

New member
My kids have also shown no symptoms and have to this date have never cultured anything. But Ian had a broncoscope at age 3 where they take a small camera and look at his lungs. What they saw was irritation which one doesn't see in regular lungs. So they started him on Pulmozyme then. My daughter was had an even better broncoscope she had lungs of a normal child. So no pulmozyme for her.
 

Gnome

New member
My kids have also shown no symptoms and have to this date have never cultured anything. But Ian had a broncoscope at age 3 where they take a small camera and look at his lungs. What they saw was irritation which one doesn't see in regular lungs. So they started him on Pulmozyme then. My daughter was had an even better broncoscope she had lungs of a normal child. So no pulmozyme for her.
 

Gnome

New member
My kids have also shown no symptoms and have to this date have never cultured anything. But Ian had a broncoscope at age 3 where they take a small camera and look at his lungs. What they saw was irritation which one doesn't see in regular lungs. So they started him on Pulmozyme then. My daughter was had an even better broncoscope she had lungs of a normal child. So no pulmozyme for her.
 
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